Guilty!…. By Association? Taking Our Measure

Dr. Klimas was raked over the coals recently for being a co-author of a study on stress management that brought symptomatic relief to some people with CFS. In the upset of the moment the rest of Dr. Klimas’s work – her uncovering of the central immune dysfunction in ME/CFS (NK cell dysfunction), her numerous research papers, her advocacy work as President of the IACFS/ME, IACFS/ME Board member, CFSAC member, Fair Name Committee Member and her decades of work as a physician specializing in ME/CFS, was mostly forgotten.

Now it’s Dr. Vernon’s turn to be at the end of a ‘guilt by association’ charge.

I’ve had a lot of mail lately about the CAA. The recent comments, and absence of meaningful commentary, by Kim McCleary, the president of the CAA, on CNN, are a disgrace: The fact that Suzanne Vernon, the Director of research, has 30 papers on PubMed coauthored by William Reeves, most recently in 2009, pretty much puts the nail in the coffin for me.

I love the transparency and commitment to objectivity Dr. Deckoff-Jones has shown in her blogs regarding the WPI’s objectives and to her antiretroviral treatments. She’s dealt with often emotional topics in admirable fashion and I look forward to watching her help create a vibrant and creative clinical environment at the WPI. (. See From the Patient Side: Dr. Deckoff-Jones Talks.) In this case, however, I think she’s wrong.

Guilt by association does often work, it’s true, and it’s easy to see how it would in this case. Dr. Reeves, is after all, greatly disliked in the CFS community and Dr. Vernon did co-author a substantial number of papers with him. On the face of it you might think that the 30 papers she co-authored with Dr. Reeves would be more than enough to put ‘the nail in the coffin’ for her and the CFIDS Association of America.

The Evidence

A quick look at the papers Dr. Vernon co-authored with Dr. Reeves suggests, however, the picture is far more complex. A PubMed search using “SD Vernon” and “WC Reeves” does pull up 30 papers but most of those papers (17) are not on CFS at all but on Papillomavirus work Dr. Vernon did with Dr. Reeves outside of the program. Over the ten years or so Dr. Vernon was with the CFS research team she co-authored only 13 papers with Dr. Reeves – a surprisingly small number suggesting, in fact, that hers and Dr. Reeves research interests in CFS diverged and their paths intersected only occasionally. …

A look at the papers themselves (see the list below) indicates that they are almost all on CFS pathophysiology.. They included studies on immune (complement) activation during exercise, gene expression levels in people who came down with CFS after an infection, genetic differences in HPA axis receptors, mitochondrial dysfunction after infection with Epstein Barr Virus, auto-antibodies in CFS, mycoplasma, sRNA gene sequences, gene expression and biomarkers, economic impact, etc. molelcular profiling, etc.

These papers, however, don’t begin to tell the story of her time with the CDC or with CFS. While working with other CDC and outside researchers she published papers on cytokine networks, a theory of HPA axis bistability suggesting a novel way to return the axis to proper functioning, gene expression network analysis, inflammatory immune signaling, neuroendocrine and immune network remodeling, genetic evaluation of the serotonergic system, gene expression and exercise. Some of these are on subjects the WPI is researching right now.

‘Dr. Vernon’s Studies’ – It’s important as well to draw the distinction between studies which she initiated (was the chief author) and which she was a part of (see the last list). These studies indicate an unfailingly interest and curiosity in the pathophysiological side of ME/CFS with a particular interest in viruses. (In the Empirical Definition study which is referred to so frequently referred she is the second to last author note which is the least significant place to be; the most significant being the first author (study initiator) and last author (senior author overseeing the project)

In fact, based on her record at the CDC and the CDC’s turn to more psychological matters since she left, perhaps the most logical conclusion to make about Dr. Vernon’s departure from the group, is that she pressed for more physiological research and left the CDC after the program took a more psychological bent. (Shortly after she joined them the CAA began the investigation into the CDC’s finances that lead the CAA to call for Dr. Reeves ouster in late 2008.)

Recent Work

Even if her work at the CDC had been questionable – and which, aside from being the co-author of one paper (Empirical definition), it isn’t – shouldn’t Dr. Vernon be most judged on her work after she left the confines of the CDC? As Research Director of the CFIDS Association she has been able to put lead a program for the first time. What does her work at the CAA suggest about her priorities. Should that put the ‘put the nail’ in the CAA’s coffin’ for CFS patients (or for the Clinical Director’s of WPI? :))

Since Dr. Vernon left the CDC the CFIDS Association has

created a Research Network and BioBank (currently being used to assess XMRV)

Put on the 3 day Banbury Conference (with another one scheduled for this year) which brought many new faces to the field

funded six studies on abnormal pain (and other) receptor levels, neuroendocrine-immune system functioning as people come down with ME/CFS after an infection, the cause of inadequate blood flows to the brain, the effects of exercise on gut microflora and immune activation, mitochondrial dysfunction in the brain and developing software program to make makes sense of 20 years of CFS research – that will be provided to other researchers after it is complete.

Teamed with new researchers from eight institutions that have not studied CFS before to submit two grant proposals on autoimmune aspects of CFS

Was awarded the OFFER Researcher Excellence Award at the Reno 2008 IACFS/ME Conference

Published papers on Immune Network Remodeling in GWS, cytokine networks in CFS, Immune functioning in GWS and periperhal blood gene expression after stress.

It doesn’t – at least for me. Dr. Vernon has been effective in enrolling new researchers in the field, in getting researchers to work together, in creating new resources for CFS research (Biobank) and in getting CAA researchers federal grants. A closer look at her record suggest that instead of being ‘the nail in the coffin’ for the CFIDS Association, she’s a considerable asset to the field.

Many Tricky Subjects

There are many tricky subjects in CFS. Dr. Vernon, with her history with the CDC, is clearly one. Dr. Klimas co-authorship of a stress reduction was another. The President of the IACFS/ME, Dr. Friedberg, is another. Dr. Friedberg is a psychologist (with ME/CFS) who has studied the use of behavioral therapies in CFS and argues vociferously for more pathophysiological research and less behavioral research. This is not because he believes behavioral therapies don’t help; he finds they do help with him and with his patients but he does not believe they help enough; ie they are not the answer – something both he and Dr. Klimas are in agreement on.

What about Dr. Jason? He has a record of unparalleled record of advocacy for CFS. The most probing and outspoken member of the CFSAC committee he was also a Board of Director for the IACFS/ME. He’s produced seminal studies indicating how prevalent and costly CFS is, demonstrated that the Empirical Definition brings in increased rates of people with depression, co-authored review papers highlighting the high rates of oxidative stress in the disorder, and publically blasted the CDC for conducting personality studies. Yet Dr. Jason is also a psychologist who has studied ‘coping’ and behavioral therapies and was a co-author of the paper that argued that an ‘empirical-like definition consisting of a series of questionnaires was the next step for ME/CFS? (It did not set the criteria).

Dr. Deckoff-Jones is very new to this field and Dr. Vernon is a somewhat problematic figure given her history with the CDC, but I think she’s proved herself -both at the CDC and afterwards – to be a friend, a very good friend to ME/CFS. Dr. Deckoff-Jones has been a very good friend to ME/CFS as well. I hope Dr. Deckoff-Jones will reconsider that ‘nail’ and these two very good friends to ME/CFS can work together at some point.Papers Co-authored by Dr. Vernon and Dr. Reeves

The material on this site has been compiled by laypeople and Phoenix Rising does not guarantee the accuracy or completeness of the content. It is intended for information purposes only and not as medical advice. We accept no liability to any person in relation to the content: it is the user’s sole responsibility to evaluate the information and to seek advice from a medical or other professional regarding their own health or personal situation.​